The FPIES Handbook is now available for purchase! It is my hope that this book about Food Protein-Induced Enterocolitis Syndrome will help many families to improve the quality of life for their child, and thus their whole family. Food allergies of the digestive tract are on the rise; one of the most serious among them … Read more

Processing the feelings associated with having food allergies can be difficult for a young child. So I want to share something that has been a big emotional support for our daughter. Back when our daughter was 3, she really struggled with having different foods than my husband and I. Our daughter’s safe foods are very hard to source, and it’s not possible to get enough to feed our whole family her foods. Alhrough we do sometimes share a treat like freeze dried fruit. We spent a lot of time researching animals and diets, to make sure we could find a pet to feed without making our daughter sick. Fortunately despite her many food and environmental allergies, she doesn’t have any animal allergies.

Eventually we got a Guinea Pig, and it ate our daughter’s safe fruits and vegetables, plus hay, and pellets free of all her allergens. We had conversations many times a day about what was safe and not safe for a Guinea Pig to eat. We talked about keeping the Guinea Pig healthy, and making its tummy feel happy. It has been really helpful for our daughter to realize she can share some foods with the Guinea Pig, but others safe foods for our daughter, like meat and nuts, would hurt it. And the Guinea Pig eats grass and hay, but that is bad for people to eat.We talked about the foods our daughter and the Guinea Pig could both eat, and encouraged our daughter to feed her those foods often. Having to respect the food restrictions for a pet has helped our daughter with the idea that we are helping her by not sharing foods with our daughter that make her feel bad. Within a month of getting our Guinea Pig, our daughter stopped asking to eat our food. Getting a pet was the most helpful thing we have ever done for helping deal with the emotional aspect of FPIES.

Even though we settled on a Guinea Pig, this same lesson could work with any pet. Each species has its own dietary requirements. Having a daily, ongoing conversation about dietary needs, cross contamination, and keeping everyone’s body healthy really helps the lessons sink in. Do any of you have a pet? Comment below what kind of pet you have, and if it’s been helpful to your family.

Oral Rehydration Solution (ORS) is used to maintain proper fluid and electrolyte levels in the body. there are numerous commercially available preparations. But they often contain processed sugars, dyes, artificial sweeteners and preservatives. So if you want something better, for health or allergy reasons, I have made a few recipes for you. The first two … Read more

Bonnie Landau from Special Mom Advocate is here with a guest post on how she has learned an important mindset shift because of her son. When we’re pregnant we have certain expectations of parenting that seem so ideal and wonderful. The walks with the stroller, teaching our kids to games, watching them grow, learn and … Read more

There are about 7,000 rare diseases which are recognized on February 28 for Rare Disease Day. Food Protein-Induced Enterocolitis Syndrome (FPIES) is the rare disease that affects our family. It primarily affects children young children, and is a poorly understood food allergy condition. It’s a non-IgE, cell mediated allergy that causes two categories of symptoms: … Read more

Before she was born, I never gave much thought to what my daughter would eat for breakfast. If I did think about it, I figured she would have a typical American breakfast. Cereal and milk, pancakes, bacon and eggs, etc. But instead food has been a struggle for her. It’s been a long hard road … Read more

The FPIES Food Survey has been a huge help to the FPIES community. Many years ago, an FPIES mom had the idea to create a Food Survey to help guide trials by risk ratio. Now another FPIES mom has created a new survey, because it’s not easy to go back and edit old responses as … Read more

I was nominated by Modern Motherhood for the 2018 Blogger Recognition Award. She blogs about her life as a mom. I’m honored she selected my blog from the many choices she had. Now it’s my turn to pass the award on to 10 more blogs. 2018 Blogger Recognition Award Winners James’ Health Journey Blog from … Read more

It has been widely discussed that cow and goat milks have a high rate of cross reaction. But I’m curious about other types of mammal milk also. So I have created a form to collect some data. Make sure to Like 👍 my page on Facebook if you want to know the results of this. … Read more

Heather Martin from Mom of No Rank is here today with a guest post. She had originally written this post on struggling with the US health insurance system for Facebook, explaining the excessive difficulties of getting her child the medical care they need. I asked she if I could share it here as well, because it shows the struggle that parents of medically complex children, or adults with their own chronic health problems deal with constantly. Dealing with insurance, billing, and endless paperwork and phone calls is one reason many special needs parents have had to quit their job. As long and complicated as this story is, she has actually simplified it for us. So keep that in mind as you read it.

I have a story for you that will illustrate a national problem we are all having. It’s long, but the fact that it is long is the actual issue. Bear with me.

We switched insurance last fall, to a large, national company, and have a child with a monthly order for nutritional and medical supplies from something called a DME supplier (durable medical equipment). I call the month before the change is official to ask about our benefits. They can’t tell me the percent that would be covered until the first day the insurance is active. Sorry! Annoying for budgeting purposes, but…fine. I ask whether our old DME provider is in-network and am told they are, which is great, because it takes *hours* on the phone to get a new order set up properly. This is not an exaggeration, as you’ll soon see.

A month later, we get a letter from insurance saying our DME is out of network. When I call back, the rep finds the name of the company — in network. I read her the letter, but she can’t understand why it was sent, and she gives me the provider ID number they have listed. I call the DME provider to check, and they have a different number. The one insurance was looking at was only for their home health division, not the DME. Ooopsie! Call insurance back, and they give me their list of in-network DMEs, saying all I need is a primary care referral. But a specialist manages this order, I say. Oh, that’s fine, as long as we have a primary care referral to that specialist. I verify that they have the current referral on file. Yes!

Now to the list of DMEs…dozens of them. But, they are totally randomly organized. There’s no way to filter them except by location, and you don’t want to do that, because this is mail order. I don’t need them to be close — I need them to ship. The list includes companies that only sell diabetic supplies, or only ostomy supplies, and a random Walgreen’s in Witchita, KS. Does “American Care Equipment” sound like they carry nutritional supplies? “J and R Medical”? Your guess is as good as mine! I do not want to use the big name I recognize, because I recognize it from my own patients complaining about improper billing. So, I start calling to find one that carries all the supplies we need. After several calls, I find one, and have the doctor send the complicated order, a letter of medical necessity, and a copy of our state’s senate bill mandating coverage for the special formula my child requires for his medical condition — I’ve learned from experience that this cuts down on improper denials of coverage. (We are lucky to have this kind of law, which many states do not, because this formula that my child needs to survive is $40 a can retail, for a total of about $700 per month.)

Then the DME calls to let me know they got the order, but although they carry the formula and all the tube feeding supplies, they do *not* carry the pump we need to run the feeding. Oopsie! They forgot to mention it. I find another DME that has all the supplies. Great! Do they carry pumps? Nope! I call the insurance to see whether they can give me any information about who on this long long list might carry pumps. They have no idea. Okay, can you tell me what percentage coverage we will have for DME supplies now that you’re officially my insurer? No, for that they would need the specific ordering codes from the company. I have never been told this for any other medical need from any other insurer. Usually, they say 80% coverage for in-network hospitalizations, 20% for out, 50% for DME supplies, whatever. This big company cannot tell me what percent they will pay unless I give them ordering codes…I just have to order it and find out! Good times!

Okay, back to the list, and after several more calls, I find one that carries all the supplies — including pumps! The specialist’s office sends them all the paperwork. The local DME office calls to say they got the order, but…they do not fill pediatric orders! You carry this pediatric formula, but you do not fill pediatric orders? That’s right. Ooopsie, forgot to mention. Do any of their other, national offices? Yes! But they can only ship to me from the local office, company policy. Sorry!

I throw in the towel, and call the big DME that I do not like. They are under relatively new management — maybe things have changed. They have everything! They provide pumps! They fill pediatric orders! The absolute angel of a nurse at the specialist’s office sends a THIRD ORDER with all attendant paperwork to the big DME. They fill the order perfectly. Then the next month’s order, perfectly. Hmmm, no bill yet. They tell me they haven’t heard from our insurance. Third order. No bill. The DME tells me what they think we will owe, which doesn’t sound right…too little. After 4 months, we get our explanation of benefits for the first month’s order from the insurer, with a very large number for “what you may owe provider”. The provider does not think we owe this. I call insurance. Oh, that’s for your out-of-network deductible!

I take a deep breath.

I got. The name. And contact info. For this company. From the in-network list. That you provided me.
Four. Months. Ago.

Hold please!

The rep comes back and says, Oh! It’s because you don’t have a referral from primary care! So you’ll be charged out-of-network.

This is not my first rodeo. I have notes. So I say, well, your rep by this name told me on this date that it would be covered as long as the ordering specialist has a primary care referral on file. The referral, which this rep verified you have, is active through these dates. So.

Hold please!

After 18 minutes, the rep comes back on and says I’m right! Our plan *does* cover this provider in network, and they do *not* require primary care orders as long as the specialist is properly referred. They will fix this and send me a new explanation of benefits within 24 hours. Great! So, now that they have the ordering codes in front of them, can they tell me what percent of this bill I will owe for in-network? Nope! Our plan says the rates are decided in individual agreements with each DME. There is, unbelievably, no way for this rep to look up the DME on a database somewhere and find out what the agreed-upon percentage is. This means it’s possible I would pay less with a different DME, if I shopped around, and took advantage of that market competition that everyone is so hot on. But, most DMEs will not call your insurance and calculate what you owe *until you actually place an order through your physician*, so you *cannot* compare unless your insurer will give you the percentages for the different companies on that long, long list. As it is, I will have to call the DME to find out what their agreement says I owe…

AFTER they get and process the amended report from our insurance. Which will be after they have sent our fifth order. Each order is about $1300. I have no idea what percent we will owe.

I made it through this call without losing my cool. I’m fine. We’re all fine…We will have plenty of money to pay the bill regardless of what it is. Our child is growing well. This is relatively good, employer-subsidized insurance that we’re in no danger of losing. I am in good health and sound mind, I’m a health care provider myself, English is my native language, and I only work part-time, so not only do I easily understand the terminology involved and my rights, I can spend hours on the phone to get this figured out without missing work. This is not true for many people.

There was one month right at the beginning, when I was trying to get the first order with the new DME, and we came within 2 or 3 days of missing the chance to order for that month. If you miss a month’s order, most insurance will not cover it — they only cover one order per month, and if you order a few days late and go into the next month for any reason, even if it is the insurer’s fault for not processing your quarterly re-approval for example, even though your specialist and DME provided the application for re-approval a month early, they will not cover the backorder. This formula is my child’s main source of nutrition, and remember, it is really expensive. Now, if this had happened to us, I know how to order supplies out of pocket. I’ve done that before, because as one example, insurance will only cover 4 extension tubes and 30 pump bags per month, even if there are 5 weeks or more than 30 days in a month and it is unsafe to use equipment for longer than recommended, so I have ordered extra ones off of EBay and Amazon to have backups when there is a hole in something, or we run out before the month is up. It would have cost a lot to order for a whole month, and I would have had to have it overnighted, but our child would not have missed a day of food, because we are incredibly lucky. This is not true for many people.

I think this system is unacceptable. Do you? It would take a lot of effort to change it. The thing is a seething, bloviating behemoth of a system, it makes a lot of campaign donations, and it has a big ego. It doesn’t want to change. If you would like it to change, it’s going to take communicating that to your government reps and candidates at the state and local level. Loudly. A lot.

People not doing this has resulted in many among our fellow citizens worrying endlessly, suffering needlessly, and dying early. This is not an exaggeration. They don’t have insurance. Or, they can’t afford their order after insurance denies it. Or, they can’t afford their order after insurance *approves* it, because of the markup required to pay everyone at the pharmaceutical company, the insurance company, and the team at the doctor’s office whose only job it is to navigate this stuff. Or, they have good coverage, but they don’t get their order on time after insurance drags their feet. Although other ways of providing care have drawbacks, this *does not happen* in other developed countries, and it doesn’t have to happen here — People calling their reps is what thankfully, blessedly got our state law passed, the one that requires our insurer to cover a medically necessary formula for our child –the one that would cost us $700 a month otherwise, plus another $600-700 in supplies. (Shout out to Leticia Van de Putte for sponsoring it.)

How much does it cost us after insurance? Well, I’ll let you know, someday…when I finally get a bill.

Check out her blog to learn how she stays calm through all of this, and follow her on Twitter at Mom of No Rank.